terrified : hi, I have been suffering with... - My Ovacome

My Ovacome

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terrified

Hkf85 profile image
11 Replies

hi,

I have been suffering with bloating and stomach pain like period pain so went to doctors ended up going private and having MRI which showed a 20cm complex cyst. My blood work on CA125 was 33, I’m now being discussed on Friday at a MDT meeting and find out Friday night what it is. I’m absolutely terrified

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Hkf85 profile image
Hkf85
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11 Replies
Sunsetime profile image
Sunsetime

Hi , so sorry you find yourself in this position, waiting for results can be so overwhelming and not knowing what it is incredibly difficult to cope with. If you can try to stay in the present and not think too far ahead. Try to limit searching on the internet, you don’t know yet what it is and searching on the internet will lead you down rabbit holes. If you are searching stick to sites like ovacome and remember to search for positive stories. I know it’s this is easier said than done. Once you know what it is, you will have a better understanding. Not knowing is the worst part. Be kind to yourself. I have found the online community a great support. Ovacome has helpline numbers to call if you think talking with someone will help. Xx

SpecialUnicorn profile image
SpecialUnicorn

I know what it is like to be scared while you are waiting for results and a plan for how you will be treated. There are no simple words that can ease your stress. If you want to chat, please reach out. Even if it is just for someone to listen. You are not alone. Sending prayers for you.

delia2 profile image
delia2

I just want to send hugs and hope it’s not cancer or if it is that it’s an early stage. There are different types of ovarian cancer and sometimes the big tumors are a less aggressive type. Only surgery or a biopsy can definitely identify cancer or stage. Try to distract yourself as much as possible. Do things that keep your mind occupied. I have a scan Friday so I know how you feel.

candyapplegrey profile image
candyapplegrey

My sister had an ovarian cyst the size of a grapefruit. Similar symptoms to you. But no cancer. Let's just hope that's all it is. x

0462County profile image
0462County

Hello. I fully understand what you are going through. The waiting for results is so scary. Please let us know how you get on. The ladies on this forum are amazing for support and advice.

Love and hugs Beth xx

Hkf85 profile image
Hkf85

I’ve had my second lot of bloods back my CA125 is now reading at 43 and my HCG is 8.7. So my consultant didn’t seem positive for the outcome on Friday

Sunsetime profile image
Sunsetime

hi , hang on in there Hkf85. Whatever it is there will be a treatment plan unique to whatever you need. I know this is so difficult. Sending hugs. Keep in touch and let us know how Friday goes. Xxxx

Fluffyjumper profile image
Fluffyjumper

Hi, waiting and worrying is the worst. Don’t consult Dr Google, focus on the present. We all know how you feel. Have you had an Have you asked about an CT scan with contrast as that may give more detail. Outcomes are generally not known until after a biopsy or surgery. The MDT will come up with an appropriate treatment plan to discuss with you. Unfortunately, given the size of your cyst, surgery will probably be recommended. The good news is that you’ll feel a lot better after any surgery.

Ova104 profile image
Ova104

Hello

A huge percentage of complex cysts are benign you have to think positively. I have one and am also waiting to see what consultation says, I had another tv ultrasound last week. It is classed as large and yours is, they will probably want to remove it just because it could cause your bloating, affect stomach and bowel. But those symptoms you have can also come from stress and ibs which sends everything into spasm. I have low grade period pain all the time, don't know if it is the cyst, old back issues, menopause, hormones or just plain worry. This online community have been super for me in terms of making friendships and getting support from people who are in the same boat. Sit tight once you have knowledge you can deal with it but don't catastrophize because it is useless and only makes pain worse. That is my experience in this whole journey. I started taking phytaphix a supplement which helped my bloating, period like pain and abdominal discomfort. I had endometriosis all my life. Also taking magnesium which I have also seen a benefit from to calm my nerves and sleep a bit better. This is not a product plug told my doc about it but it seems to have settled my hormones my estrogen came back stable on bloods and it was very high so hormones were totally out of whack. Always ask your doctor. It's best it was found now for you as some only find it when they suffer an ovarian torsion and get emergency surgery and they never knew they had a cyst in the first place. Mine was an incidental finding I went for scan lumbar spine. I think my high levels of estrogen are driving the cyst but ovarian cancer specialist couldn't be definite on that...I think the whole estrogen dominance all my life was no help. I had a very overworked right ovary periods every 21 days or less and the mass is on that side. The other lazy left ovary is fine, did no work :) sitting there letting the right do everything! If you need to chat I'm here. I am taking it one day at a time. Just because it is big does not mean it is cancer...Although there is a complex ovarian cyst cancer risk I have been told, these cysts won't necessarily lead to cancer either. They categorise these cysts based on a risk of malignancy index or so they told me eg mine has septations, multioccular...there's criteria they assess based on its features. The best scans are the tv ultrasound or so the ovarian cancer consultant told me, I did the others too mri contrast dye...I ask a lot of questions. I went for 3 different opinions as I was not getting the information I needed for myself..It is your body so don't be afraid to ask..xxxxx

phytaphix.com/products/endo...

Jennifer1959 profile image
Jennifer1959

I am so sorry you're going through this and the terror you feel, it is something that all of us have also experienced. It is just awful. I hope you are coping ok - you just have to wait until tomorrow night now. Like a few others have said - they won't really know what they are dealing with until it is all removed and the pathology has had a good look at it. That may take a bit longer. I think someone else said - you will feel a whole lot better when it is out - I can testify to that. I had some provisional information prior to the surgery - that it was low grade and that they were operating. That made me feel a little bit better - that there was a clear plan for me and I hope this is the case for you. Good luck and remember we are all here x

enam profile image
enam

I was also. And that was in august 2016.Also had complex cyst. But things did not go worse after op and i am still here, no more treatmant after op.

Please do not be so terrified. If you read here you will see how many of us had the same fears and how it goes much better than we hoped.

Wish you all the luck and hope ill read your good results, optimistic for more hope

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